Managing Tensions in Intergenerational Care of Children With Autism Spectrum Disorder in China: A Qualitative Study of Grandparents’ Experiences

Abstract

This exploratory qualitative study examines how grandparents of children with Autism Spectrum Disorder (ASD) in China experience and cope with tensions in the context of daily intergenerational family caregiving. Seventeen grandparents were interviewed using semi-structured interviews conducted in three provinces of western China. Data were analyzed using thematic analysis. The Consolidated Criteria for Reporting Qualitative Research was used to guide the specific processes of this study. Two main themes were identified: intergenerational tensions within the family system and coping with intergenerational tensions. Specific tensions included responsible but unrecognized family role, conflicts between experiential and expert knowledge, hesitation in family care process, being caught in the middle of family conflicts, and personal life sacrificed to care. Coping strategies involved protecting harmony through silence and withdrawal, compromise in family care, psychological adjustment and acceptance, and turn emotions toward grandchildren. These findings highlight how grandparents navigate care not only through practical routines but also through moral and emotional labor shaped by cultural norms. This study contributes to a more inclusive understanding of caregiving of children with ASD and calls for culturally responsive, extended-family-oriented support systems in Chinese and similar cultural contexts.

Plain Language Summary

Understanding Family Tensions When a Child Has Autism Spectrum Disorder: A View From Grandparents in China

This study explored the family tensions that grandparents in China experience while co-parenting a grandchild with Autism Spectrum Disorder (ASD) and how they cope. Through interviews with 17 grandparents, researchers found significant conflicts arising from feeling their contributions were unrecognized, clashes between their traditional experience and the parents’ expert-led knowledge, and the immense personal sacrifice required. To manage these tensions, grandparents often chose to protect family harmony by remaining silent or withdrawing, compromising on care decisions, and focusing their emotions and love on their grandchild. The findings highlight that grandparents’ roles involve intense emotional and moral labor shaped by cultural values. This research calls for a shift towards culturally responsive, extended-family-oriented support systems that recognize and assist the entire family unit, including grandparents, in navigating the complexities of ASD care.

Keywords

Autism Spectrum Disorder grandparents intergenerational care family tension coping strategies China

Introduction

Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder characterized by persistent deficits in social communication and interaction, along with restricted and repetitive patterns of behavior, interests, or activities (American Psychiatric Association, 2022). When a child is diagnosed with ASD, families are often required to provide long-term, high-intensity caregiving support (Gao & Drani, 2025). Existing research on family caregiving for children with ASD has predominantly focused on their nuclear families, that is, parents, emphasizing their psychological distress, coping mechanisms, and access to support services, and often using quantitative methods to explore specific relationships (Fallahchai & Fallahi, 2022; Gao & Drani, 2024; Hsiao, 2024). Less attention has been paid to extended family members, especially grandparents of children with ASD. Across both Western and Asian contexts, grandparents are found to provide emotional support, practical assistance, and even assume primary caregiving responsibilities in multigenerational households (Luo et al., 2012; Sudo et al., 2025). In addition to adapting daily routines and caregiving strategies to meet the grandchild’s needs, grandparents often serve as emotional anchors and advocates for their grandchildren, contributing meaningfully to family resilience (Piper, 2020). In China, caregiving for children is deeply embedded within the extended family structure, with grandparents frequently assuming central responsibilities, particularly when parents face employment or financial challenges (Gao et al., 2023).

In the families of children with ASD, due to the greater needs for caregiving, the supportive role of grandparents is more complex and important (Huang et al., 2020). Due to their parenting experience, grandparents may sometimes be able to identify the abnormal behaviors of children with ASD earlier in their development, thereby shortening the diagnostic delay (Sicherman et al., 2018). However, some studies have also shown that due to considerations such as family reputation and social stigma, grandparents may be more tolerant of the abnormal behaviors of children with ASD than parents and resist seeking a medical diagnosis (Ha et al., 2014; Huang et al., 2020). Studies have also shown that grandparents play the mediator role within the extended family and act as guardians of the needs of siblings of children with ASD (Kirchhofer et al., 2022; Prendeville & Kinsella, 2019). In more studies, grandparents are considered an important source of emotional and instrumental support for parents of children with ASD, and have a positive impact on parents’ well-being, quality of life, and resilience (Crettenden et al., 2018; Prendeville & Kinsella, 2019; Sicherman et al., 2018). Grandparents also often take on the role of family caregivers for their grandchildren with ASD, and are the primary supporters of the children’s parents in getting family respite (Crettenden et al., 2018; Luo et al., 2012; Prendeville & Kinsella, 2019; Yang et al., 2018). In families of children with ASD in China, the intensity of daily caregiving tasks, behavioral regulation, and service coordination often makes grandparental involvement indispensable (Gao et al., 2023).

At present, few studies have systematically examined the complex intergenerational relationship involved in raising children with ASD, but it is very worthwhile, especially in non-Western cultural contexts. While collaborative relationships between parents and grandparents can enhance family functioning, tensions often emerge due to intergenerational differences in caregiving beliefs, daily practices, and expectations regarding roles and authority (Gao et al., 2023; Han & Gao, 2025; Huang et al., 2020). Such intergenerational dynamics are not shaped solely by family composition or personal dispositions, but are deeply embedded in broader cultural scripts that assign meaning to age, authority, and caregiving responsibility (Goddard & Wierzbicka, 2004; Yamini et al., 2025). In many Asian societies, including China, deeply rooted norms of filial piety and intergenerational reciprocity position grandparents as moral authorities whose guidance should be followed (Ha et al., 2014; Huang et al., 2020). These cultural expectations often elevate older generations’ roles in family decision-making, including child-rearing. The few studies that have been conducted report that when raising a child with ASD, traditional authority discussed previously may clash with contemporary parenting approaches, particularly in relation to intervention choices, behavioral management, and educational priorities (Li et al., 2024; Shorey et al., 2020). Studies have also shown that tensions frequently emerge from knowledge asymmetries: parents are more likely to access and accept professional diagnoses and therapeutic models, while grandparents may be unfamiliar with these frameworks or interpret autism through moral or spiritual lenses (Huang et al., 2020; Prendeville & Kinsella, 2019). These epistemological divides can lead to disagreements over the nature of the child’s condition, what constitutes “good” parenting, or whether intervention is even necessary (Clark et al., 2019; Goh et al., 2021). Moreover, parents may feel constrained by the need to respect elders’ views, while simultaneously feeling unsupported or undermined in their caregiving efforts (Shorey et al., 2020). In some cases, such contradictions result in emotionally charged tensions, role confusion, or even the withdrawal of grandparents from active caregiving (Huang et al., 2020). Understanding these dynamics requires close attention not only to individual beliefs and family negotiation patterns, but also to the cultural norms that shape caregiving legitimacy and power across generations.

Research Questions

Building on background discussed previously, this study aims to explore the tensions experienced by grandparents of children with ASD in China within the context of intergenerational family care, and to examine how they cope with these tensions. Specifically, it addresses two key questions: (a) What types of tensions do grandparents of children with ASD in China experience in intergenerational family care? and (b) How do they cope with these tensions in their daily family caregiving practices? This study shifts attention from nuclear families to extended families and examines the role of extended family members in shaping care experiences. In doing so, it not only fills an important gap in current ASD study, but also provides culturally grounded insights that can inform the development of intergenerational support interventions and inclusive family service models in China and similar sociocultural contexts.

Theoretical Analysis Framework

To address this study’s research questions, this study adopts an integrated theoretical orientation, as no single theory is sufficient. This framework combines family systems theory, cultural scripts theory, and the ethics of care (refer to Figure 1). First, family systems theory is foundational for addressing RQ1. It provides a structural lens to understand how intergenerational tensions emerge from relational patterns, blurred role boundaries, and emotional interdependence within the household (Bai et al., 2023; Cridland et al., 2014). However, these systemic structures are not experienced in a vacuum; they are interpreted and given meaning through a cultural lens. Therefore, cultural scripts theory is integrated as a vital component. It allows us to understand how culturally specific norms and shared meanings shape the expectations and rules of engagement for caregiving roles within the family system (Goddard & Wierzbicka, 2004). Finally, to address RQ2, the ethics of care provides a motivational perspective. It allows us to examine how grandparents navigate tensions not merely as practical challenges, but as relational and moral responsibilities (Tronto, 2020). The way this ethic is understood and enacted, in turn, is profoundly informed by the cultural scripts that define good care and relational duty. Together, these theories are integrated: family systems theory identifies the structural source of tensions, cultural scripts provides the interpretive context for those tensions, and the ethics of care illuminates the moral and relational motivations driving the coping strategies. This integrated framework supports a culturally grounded analysis of how intergenerational caregiving is experienced, negotiated, and sustained.

Figure 1.

Theoretical analysis framework.

Method

Study Design

This study employed a qualitative study design, guided by an interpretivism paradigm (Peat et al., 2019). A qualitative approach was chosen for its ability to provide rich, in-depth insights into participants’ lived experiences, social interactions and meaning-making processes (Creswell & Poth, 2016). These are essential elements for understanding care as a culturally and relationally embedded practice. The Consolidated Criteria for Reporting Qualitative Research (COREQ) were used to guide the specific processes of this study (Tong et al., 2007) (See Supplemental Documents for detailed information).

Inclusion and Exclusion Criteria for Participants

Participants in this study were grandparents of children diagnosed with ASD who were actively involved in family caregiving. The inclusion criteria were: (a) Participants must be biological grandparents of a child formally diagnosed with ASD from a hospital or medical institution officially authorized to issue diagnostic certificates under Chinese health regulations; (b) The grandchild must be aged between 3 and 18 years, and currently residing in mainland China; Age reference: China’s Law on the Protection of Minors and Compulsory Education Law (Central People’s Government of the People’s Republic of China, 2020, 2021); (c) Participants must have current or recent caregiving experience (within the past 2 years), defined as providing regular emotional, practical, or supervisory support in the child’s daily life; (d) Participants must be able to communicate effectively in Mandarin and provide informed consent to participate in a qualitative interview. The exclusion criteria were: (a) Grandparents who had no direct caregiving involvement with the child; (b) Grandparents whose grandchildren had comorbid conditions that significantly overshadowed the ASD diagnosis, such as severe intellectual disability or degenerative disorders, which may complicate the caregiving context beyond the study’s scope; (c) Grandparents with cognitive impairments or severe health conditions that could limit their ability to participate meaningfully in an interview.

Participants Recruitment

This study employed purposive sampling to recruit grandparents who met the inclusion criteria. Purposive sampling was appropriate given the exploratory and interpretive nature of this study, which aimed to capture the depth and diversity of caregiving tensions in family contexts (Palinkas et al., 2015). The sampling work was carried out by the first author. Participants were recruited through multiple channels, including peer support groups, ASD intervention centers, special education schools. Participants were recruited from Gansu Province, Shaanxi Province, and Sichuan Province in China. The recruitment process adhered to a structured and ethically sensitive three-step protocol, drawing on established qualitative research guidelines (Palinkas et al., 2015). First, study information sheets describing the research purpose, eligibility criteria, and interview procedures were distributed by gatekeepers (center/school staff or group facilitators) to protect the confidentiality of potential participants. Second, interested individuals contacted the research team voluntarily, after which they underwent a brief eligibility screening via phone or WeChat. Third, participants who met the inclusion criteria were provided with a consent form and a pre-interview information session to clarify their rights and expectations. Efforts were made to ensure diversity in caregiving roles (e.g., primary vs. secondary caregivers) and geographic settings (urban vs. rural). Recruitment continued until data saturation was reached, with no new conceptual themes emerging (Guest et al., 2006).

Data Collection

Data were collected through semi-structured interviews, which allowed participants to describe their caregiving experiences, perceived intergenerational tensions, and coping strategies in their own words. An interview guide was developed based on the research questions, relevant literature, and theoretical analysis framework (Majid et al., 2017; Turner, 2014) (See Supplemental Documents for detailed information). As interviews were conducted in Mandarin Chinese, the guide was developed and finalized in Mandarin; an English translation of the guide is also provided in the supplementary materials for review. It included open-ended prompts about caregiving roles, family decision-making, intergenerational communication, and emotional challenges. Two pilot interviews were conducted with grandparents to assess the clarity, cultural appropriateness, and flow of the guide. These pilot participants were not included in the formal sample, and the data were used solely to refine the guide, not for thematic analysis (Majid et al., 2017; Turner, 2014). Interviews were conducted between 11/2024 and 02/2025 by the second author. The interviews took place in private, quiet locations, depending on participants’ preferences and logistical convenience; 12 interviews were conducted in-person (such as in small cafés or restaurants) and 5 were conducted via WeChat video calls. Each interview lasted between 60 and 90 min. Participants received a verbal introduction to the study and were asked to provide written informed consent before the interview. With participants’ permission, interviews were audio-recorded and subsequently transcribed verbatim. Field notes were taken immediately after each interview to document contextual observations and initial analytic reflections. All participants were assured of confidentiality and assigned codes to protect their identities. All participants were invited to review their transcripts for accuracy; their respective transcripts were sent to them via their preferred contact method (e.g., WeChat or email), providing them with the opportunity to revise, clarify, or request the removal of any content they considered sensitive or misrepresented.

Data Analysis

Interview data were analyzed using thematic analysis as outlined by Braun and Clarke (2006, 2019), which is well-suited for identifying, analyzing, and interpreting patterns of meaning within qualitative data. The analysis followed Braun and Clarke’s six-phase approach: (a) familiarization with the data through repeated reading of transcripts and field notes; (b) generating initial codes by systematically identifying meaningful units related to caregiving roles, tensions, and coping strategies; (c) searching for themes by clustering codes into broader conceptual patterns; (d) reviewing themes for internal coherence and representativeness across the dataset; (e) defining and naming themes to capture the essence of each analytic category; and (f) producing the report with selected excerpts and interpretive commentary. All interviews were transcribed in Mandarin and coded using NVivo 12 to facilitate data management, coding consistency, and theme development. Four of the transcripts were independently coded by both authors to assess inter-coder agreement. Coding consistency was calculated using NVivo’s coding comparison query, yielding an average agreement of 87.5%, indicating a high level of reliability. Discrepancies were resolved through discussion and consensus. While participants were not involved in the interpretation of final findings, all were offered a summary of the main results upon completion of the study, as a form of ethical transparency and recognition of their contributions.

Researcher Reflexivity

Given the interpretive nature of qualitative research, the positionalities of the researchers inevitably shaped the design, data collection, and interpretation processes of this study. The first author is a female researcher with a PhD in applied sociology and extensive experience in both qualitative and quantitative research. She was primarily responsible for the overall study design, sampling strategy, and theoretical framing. Her academic training in family sociology and cultural studies informed the development of the interview guide and the analysis of intergenerational caregiving tensions. The second author, a male PhD candidate in social work with prior qualitative research experience, conducted all interviews. Since 2018, he has been continuously engaged in following the development of individuals with ASD and their families, both academically and in practice settings. This long-standing engagement allowed him to approach participants with genuine understanding and empathy, particularly when navigating emotionally sensitive topics related to caregiving. At the same time, his position as an “educated outsider” to participants’ family systems enabled him to maintain a critical analytic distance.

Both authors were mindful of their interpretive positions and engaged in ongoing reflexive dialogue throughout the research process. They kept field memos and analytic journals to document emerging biases, emotional responses, and interpretive decisions. Regular discussions were held to question assumptions, challenge emerging interpretations, and cross-check coding decisions (Creswell & Báez, 2020; Tracy, 2010). This reflexive process was essential in ensuring that the themes identified were grounded in participants’ narratives rather than researchers’ expectations.

Findings

In total, 17 grandparents from 17 families participated in this study. Among them, 11 were primary caregivers and 6 were supplementary caregivers; 10 were female (grandmothers). Eleven lived in urban areas and 6 in rural areas. Educational levels varied: 6 participants had completed primary school, 7 junior high school, 2 high school, and 2 held bachelor’s degrees. Participants ranged in age from 53 to 64 years. Detailed demographic information is presented in Table 1.

Table 1.

Demographic Information of Participants.

Participant							Child with ASD
Code	Gender	Age	Caregiving role	Kinship	Geographic setting	Education level	Age	Gender	Severity of ASD
P1	Female	55	Primary	Grandmother	Urban Area	Bachelor’s Degree	6	Male	Moderate
P2	Female	57	Primary	Grandmother	Urban Area	High School	5	Male	Severe
P3	Female	61	Secondary	Grandmother	Urban Area	Primary School	7	Male	Moderate
P4	Female	58	Primary	Grandmother	Urban Area	Junior High School	6	Male	Moderate
P5	Female	60	Secondary	Grandmother	Rural Area	Primary School	9	Male	Severe
P6	Female	62	Secondary	Grandmother	Urban Area	Primary School	10	Male	Moderate
P7	Female	59	Primary	Grandmother	Rural Area	Junior High School	8	Female	Mild
P8	Female	55	Primary	Grandmother	Urban Area	Junior High School	6	Male	Moderate
P9	Female	58	Primary	Grandmother	Urban Area	High School	6	Male	Moderate
P10	Female	63	Secondary	Grandmother	Rural Area	Primary School	13	Female	Moderate
P11	Male	56	Primary	Grandfather	Rural Area	Junior High School	7	Male	Moderate
P12	Male	58	Primary	Grandfather	Urban Area	Junior High School	6	Male	Mild
P13	Male	53	Primary	Grandfather	Urban Area	Bachelor’s Degree	4	Male	Moderate
P14	Male	58	Primary	Grandfather	Rural Area	Junior High School	8	Male	Moderate
P15	Male	60	Secondary	Grandfather	Rural Area	Primary School	9	Male	Severe
P16	Male	55	Primary	Grandfather	Urban Area	Junior High School	7	Male	Moderate
P17	Male	64	Secondary	Grandfather	Urban Area	Primary School	11	Female	Moderate

This study identified two main themes, each with five and four sub-themes, respectively, that reflect how grandparents of children with ASD in China experience and manage tensions in intergenerational care (see Figure 2). The first main theme, intergenerational tensions within the family system, focuses on the structural and emotional strains emerging within family caregiving arrangements. Sub-themes include responsible but unrecognized family role, conflicts between experiential and expert knowledge, hesitation in family care process, being caught in the middle of family conflicts, and personal life sacrificed to care. The second main theme, coping with intergenerational tensions, captures the strategies grandparents used to maintain caregiving relationships under strain. Sub-themes include protecting harmony through silence and withdrawal, compromise in family care, psychological adjustment and acceptance, and turn emotions toward grandchildren. Together, these themes highlight the dynamic, relational, and culturally embedded nature of caregiving as experienced by grandparents of children with ASD in China. The subsequent sections present each theme and its sub-themes with illustrative examples and interpretive analysis.

Figure 2.

Research findings.

Main Theme: Intergenerational Tensions Within the Family System

Responsible But Unrecognized Family Role

Twelve grandparents (P1, P2, P3, P4, P6, P7, P8, P9, P11, P12, P13, P14) reported that despite their deep involvement in care tasks for their grandchildren, such as taking the grandchildren to and from school, managing meals and daily schedules, dealing with emotional or behavioral problems, etc., they were not considered real caregivers by the grandchildren’s parents, even by the intervention centers or special education schools’ teachers. Three of them (P2, P9, P13) described their caregiving role as “invisible” or “informal” and reported that their contribution was often taken for granted. Eight grandparents (P1, P4, P7, P8, P9, P12, P13, P14) reported being excluded from family decision-making, despite being responsible for the grandchild’s daily care; they were told to follow the grandchild’s parents’ instructions without being consulted; they described this dynamic as “being told what to do rather than being trusted to make decisions.”; the imbalance between their responsibilities and their authority leads them to feel undervalued. This theme highlighted the contradiction between the practical care responsibilities of grandparents and their marginal position in the family care structure.

I take care of everything when the grandchild’s parents are at work, but they still say I’m just helping out. I feel like I’m not really part of the picture. (P9)

I’m with the grandchild every day, but even small things—like bedtime or snacks—must follow their plan. I don’t feel like I have a say. (P11)

Conflicts Between Experiential and Expert Knowledge

Ten grandparents (P1, P2, P4, P5, P6, P8, P9, P11, P13, P15) reported that they often disagreed with the grandchild’s parents about caregiving methods; their own caregiving strategies were formed from early parenting experiences and were often considered “old-fashioned” or “unscientific.” Six grandparents (P4, P5, P6, P8, P9, P13) reported that they were criticized by the grandchild’s parents for adapting their caregiving approach to the situation; they felt torn between pragmatism and the grandchild’s parents’ expectations, especially when the latter were based on professional advice or therapeutic models. Four grandparents (P1, P2, P11, P15) shared that the grandchild’s parents’ insistence on “following the experts” or “doing what the doctor says” made them feel that their parenting wisdom was no longer valued. Three of them (P1, P2, P15) chose to comply silently, while the other (P11) admitted to silently continuing his own methods when alone with the grandchild. This theme highlights the recurring tension between the care logics of the two generations, one rooted in life experience and improvisation, and the other in formal knowledge and intervention protocols.

They want everything by the book or doctors’ suggestions, but at home, it’s not that simple. I try, but I can’t follow all their rules. (P11)

They said no sweets, but when he cries for a long time, I give a little just to calm him down. Then they blame me. But I can’t let him cry for hours. (P6)

Hesitation in Family Care Process

Twelve grandparents (P1, P2, P4, P5, P6, P7, P8, P9, P10, P13, P14, P16) reported that they often took the initiative to refrain from expressing their opinions, as they were worried that their opinions might disrupt family harmony, cause conflict, or be perceived as excessive interference; but this sometimes triggered their feelings of depression. Nine grandparents (P2, P4, P5, P7, P9, P10, P13, P14, P16) reported that they restrained their emotions when they felt rejected, disrespected or criticized; they were afraid that expressing their dissatisfaction would escalate the tension. Seven grandparents (P1, P2, P4, P6, P8, P10, P13) reported that they hesitate to offer advice or take the initiative in care arrangements, even when they have strong opinions or a wealth of experience; they fear being seen as overstepping their bounds or being too intrusive, and describe their role as “welcome when help is needed, but unwelcome when offering unsolicited advice.” This theme reflects the constant uncertainty and internal tension that grandparents often experience as they try to help carefully, often teetering between support and being seen as intrusive.

Sometimes I really want to say what I think, but I stop myself. If I speak up, it could make them unhappy. I don’t want to cause arguments. So, I just listen and keep my feelings to myself. (P16)

I want to help more, but I’m afraid they’ll say I’m interfering. If I speak too much, they shut me down. So, I only do what they ask. (P6)

Being Caught in the Middle of Family Conflicts

Ten grandparents (P1, P2, P4, P6, P7, P9, P10, P15, P16, P17) reported that they felt caught in the middle of family conflicts, especially those between the grandchild’s parents or between the grandchild and grandchild’s parents, and that they passively became the emotional stabilizers in the family. Although they were not directly involved in every conflict, they often played the role of mediator, comforters or silent buffers, often at the expense of their own emotional well-being. Eight grandparents (P2, P4, P6, P7, P9, P10, P15, P17) reported having to calm the grandchild and grandchild’s parents in times of crisis; they further reported that taking care of the grandchild and calming grandchild’s parents often left them emotionally exhausted. Three grandparents (P1, P7, P16) reported feeling pressured to refrain from criticizing or disagreeing during family conflicts, even when they perceived the grandchild’s parents’ behavior as problematic; they feared that speaking up might escalate conflict or damage family trust. This theme illustrates the personal toll that grandparents often pay to maintain family balance by suppressing their own dissatisfaction and needs in order to protect others in their role as mediators.

When the grandchild has a meltdown and her father gets angry, I have to calm them both. I can’t take sides. I just try to keep the peace. (P10)

I see things that are not right, but I don’t say anything. If I criticize the parents, they’ll say I’m interfering. So, I just swallow it. (P14)

Personal Life Sacrificed to Care

Nine grandparents (P1, P2, P4, P7, P8, P9, P11, P12, P13) reported that long-term caregiving responsibilities had severely limited their personal time, mobility, and social life; they expressed a willingness to support the family, they also described a gradual loss of autonomy and personal fulfillment, leading to emotional exhaustion and, in some cases, resentment. Six grandparents (P1, P4, P7, P8, P11, P13) said that they had given up hobbies, social gatherings, or personal medical care to prioritize the grandchild’s needs. These sacrifices were seen as necessary but often came with a sense of regret or isolation. This theme captures a form of relational imbalance in which grandparents feel their lives are consumed by caregiving.

I used to go to the park every morning, chat with neighbors, play cards. Now I stay at home all day. I don’t have time for anything else. (P11)

I rarely go out anymore. I even stopped my blood pressure checkups. The grandchild always comes first, and there’s no one else to do it. (P13)

Main Theme: Coping With Intergenerational Tensions

Protecting Harmony Through Silence and Withdrawal

Nine grandparents (P2, P4, P5, P6, P7, P9, P10, P13, P14) reported that when they felt tension or anticipated conflict with the grandchild’s parents, they consciously chose to withdraw, remain silent, or avoid the situation entirely. Seven grandparents (P4, P5, P6, P9, P10, P13, P14) reported that they had learned from past life experiences that expressing a different opinion often led to a negative reaction; therefore, they chose to keep their opinions to themselves or withdraw from the conversation as early as possible to avoid escalating the situation. Three grandparents (P2, P6, P7) reported on their specific practices during tense moments: by walking away, changing the conversation topic or shifting their attention to the caregiving task of their grandchildren, rather than responding directly. This theme illustrates how silence and withdrawal can function as a coping strategy in high-stress caregiving environments. By reducing confrontation, these grandparents aimed to maintain family harmony, even at the expense of personal expression.

When I sense things are getting tense, I just go do something else—take the grandchild out, or clean up. Talking too much only makes things worse. (P2)

I used to speak up more, but now I just listen. It’s not worth the argument. I’d rather everyone stay calm. (P7)

Compromise in Family Care

Nine grandparents (P1, P2, P3, P4, P6, P8, P10, P13, P14) reported that when there were tensions with the grandchild’s parents, especially disagreements about care practices or daily decisions, they would actively adjust their approach to avoid conflict. Instead of confronting the issue head-on, they would tone it down, change the wording, or temporarily accommodate the grandchild’s parents’ preferences. Six grandparents (P2, P4, P6, P8, P10, P14) reported how they strategically chose when and how to raise issues, often waiting for calmer moments or phrasing suggestions as questions; they explained that this approach was a skill they had learned over time to reduce conflict and preserve family relationships. Three grandparents (P1, P3, P13) reported that they intentionally compromised their caregiving approach by conceding to rules they disagreed with or by pretending to follow them. This theme reflects how grandparents develop and apply compromise-based strategies to manage intergenerational tensions.

I don’t press my ideas anymore. I say them nicely, or just ask, ‘What do you think?’ That way, they won’t feel I’m arguing. (P4)

Sometimes I just nod and say okay. I’ll do things my way when I’m alone with the grandchild, but I won’t fight them over it. (P3)

Psychological Adjustment and Acceptance

Ten grandparents (P1, P2, P3, P5, P6, P10, P13, P14, P15, P17) reported that after repeatedly encountering disagreements, rejections, or a lack of recognition, they gradually adjusted their expectations of their role in the care system; instead of continuing to seek recognition or authority, they began to accept their actual family roles as a necessary compromise for family harmony. Six grandparents (P2, P3, P5, P10, P13, P15) reported that they used to feel frustrated by not being included in family decisions or by being distrusted, but over time they had come to view their role more specifically as helpers rather than “co-parents”; they reported that shifting this mindset could alleviate emotional distress. Two grandparents (P1, P17) reported that they no longer tried to influence the way their grandchildren were raised or the way their grandchildren’s parents handled things, but instead focused on fulfilling practical responsibilities and allowing the grandchild’s parents to take the lead. This theme highlights how role reconstruction, in which grandparents define themselves as silent supporters, can function as an adaptive strategy.

I used to think I should be more involved, give my opinions, be part of decisions. Now I just do what’s needed. I don’t push. That way, everyone is more peaceful. (P9)

They don’t want my input, so I’ve stopped trying. I just do what I can quietly. It’s not easy, but at least it avoids arguments. (P5)

Turn Emotions Toward Grandchildren

Seven grandparents (P1, P2, P4, P7, P9, P10, P13) reported that when they felt neglected, misunderstood, or downhearted due to conflicts with their grandchildren’s parents, instead of choosing to confront the tension within their family, they chose to pour their energy and love into their grandchildren, which made them feel meaningful and stabilized their emotions. Five grandparents (P2, P4, P7, P9, P13) reported that their love for their grandchildren justified the sacrifices they made; while they admitted to feelings of hurt and disappointment, they found solace in caring for their grandchildren and took comfort in the small improvements their grandchildren made or the small connections they made with their grandchildren. Two grandparents (P1, P10) reported that by focusing on the care itself rather than the tensions surrounding it, they were able to maintain their emotional attachment to the family. This theme reflects a strategy among grandparents to cope with tensions by forming an emotional connection with their grandchildren.

I’ve stopped expecting too much from the adults. The grandchild is the one I care about. That’s where I put my time and heart. (P1)

They don’t understand me, and I don’t want to fight. The grandchild needs me, and that’s enough. (P13)

Discussion

This study explored the intergenerational tensions experienced by grandparents of children with ASD in China, and how they cope with these tensions in everyday family caregiving. Based on interviews with 17 grandparents of children with ASD, two main themes were identified: intergenerational tensions within the family system and coping with intergenerational tensions. The first main theme revealed five recurring tensions: lack of recognition despite high caregiving involvement, conflicts between experiential and expert knowledge, hesitation in family care process, being caught in the middle of family conflicts, and the sacrifice of personal life. These tensions reflected not only interpersonal disagreements, but also deeper cultural and structural constraints within intergenerational families. It is a supplement to previous research (Clark et al., 2019; Huang et al., 2020). The second main theme captured how grandparents managed these tensions through silence and withdrawal, compromise in family care, psychological adjustment and acceptance of their caregiving roles, and emotional investment in the grandchild. These coping strategies emphasized relational harmony over confrontation and revealed how caregiving became both a moral duty and an emotional outlet. Together, these findings show that grandparents play central yet often overlooked roles in ASD caregiving in China. Their experiences reflect a complex negotiation of responsibility, authority, and emotional survival within extended family structures shaped by Chinese cultural values.

The intergenerational tensions reported by the participants reflect not only interpersonal misunderstandings, but also deeper structural and cultural dynamics in extended family caregiving. From the family systems perspective, these conflicts stem from blurred role boundaries, overlapping responsibilities, and asymmetrical power in intergenerational families (Cridland et al., 2014; Prendeville & Kinsella, 2019). Indeed, the intergenerational tensions surrounding ASD care in this study are not merely disagreements over specific caregiving practices; they are a direct manifestation and negotiation of the power, status, and emotional relationships between the grandparents and their adult children (the parents of children with ASD). Grandparents often take on a high volume of caregiving tasks but remain outside the central decision-making unit, leading to feelings of marginalization. For instance, the feeling of being responsible but unrecognized reflects their marginal status in the care system and, more profoundly, their sense of loss as their role shifts from one of authority to auxiliary within the family power structure. The conflict between responsibility and recognition disrupts the internal balance of the family system and leads to recurring emotional tension. The findings shed light on how grandparents negotiate, in particular, but not always openly. Unclear division of labor and blurred boundaries between doing and deciding often lead to role conflicts and ambiguous relationships. According to family systems theory, such blurred boundaries can create long-term tensions, especially when one party (e.g., grandparents) is functionally essential but structurally excluded (Cridland et al., 2014).

Cultural scripts further shape the experience and expression of these tensions (Goddard & Wierzbicka, 2004). In China, long-standing values such as filial piety, intergenerational hierarchy and relationship harmony determine the distribution of power and the way disagreements are handled (Cai & Hu, 2025). Grandparents are expected to support their adult children and not challenge their authority as parents, even if they have taken on primary caregiving responsibilities. This cultural script compels grandparents to prioritize relational harmony with their children over asserting their own views during conflicts. Consequently, their adoption of coping strategies such as protecting harmony through silence and withdrawal and compromise in family care is essentially an effort to maintain their relationship with their adult children, forming a core component of their moral labor. Challenging or insisting may be seen as violating the moral expectations of respect and non-interference. Moreover, participants described themselves as helpers rather than decision-makers, not because they lacked expertise, but because cultural scripts gave the middle generation the final say. These scripts were often internalized, meaning that grandparents suppressed their discontent, not only to avoid conflict but also to preserve their identity as the “reasonable older generation” (Cai & Hu, 2025). This explains why tensions were often resolved through withdrawal or silent compliance rather than direct confrontation.

Placing these findings in a broader international context highlights cultural distinctions. While grandparents in Western societies also experience intergenerational tensions related to differing childcare philosophies and role ambiguity (Backhouse & Graham, 2012), this study reveals a crucial difference in how these tensions are managed. In contrast to Western cultural norms that may prioritize individual autonomy and conflict resolution through direct negotiation (Yamini et al., 2025), the Chinese grandparents in this study demonstrated a strongly relationally-oriented approach. Their coping strategies, such as silence, compromise, and psychological adjustment, are profoundly shaped by Chinese cultural scripts emphasizing family harmony and intergenerational hierarchy (Cai & Hu, 2025). These responses thus represent not merely personal preferences but culturally informed practices designed to maintain systemic family balance, offering a distinct non-Western perspective to the global study of ASD family caregiving.

This reliance on moral labor reflects more than emotional survival tactics; it is a mechanism through which grandparents maintain relational balance while upholding culturally valued roles. Rather than confronting conflict head-on or withdrawing entirely from caregiving, grandparents engaged in sustained efforts to preserve family cohesion, fulfill caregiving responsibilities, and protect the emotional well-being of others, often at the expense of their own needs. Drawing on the ethics of care, these strategies can be understood as grounded in a moral framework that prioritizes attentiveness, responsiveness, and relational responsibility (Tronto, 2020). Grandparents’ silence, compromise, and role adjustment are not signs of passivity but expressions of care shaped by their perceived obligation to hold the family together. Their coping arises in connection to family members and is sustained by emotional investment rather than formal authority. For example, negotiating softly or stepping back from conflict does not mean disengagement, but reflects a deliberate strategy to protect family harmony. Such actions illustrate a capacity to absorb emotional strain in order to maintain caregiving continuity (Cai & Hu, 2025). Similarly, the shift in self-perception, from decision-maker to helper, is grounded in moral reasoning rather than resignation. Emotional redirection toward the grandchild, as described by several participants, also reveals a complex interplay of duty, love, and substitution. By focusing their emotional energy on the grandchild, grandparents transform frustration and invisibility into purpose. This form of emotional displacement may serve as a stabilizing force within families, yet it also reinforces the intergenerational pattern in which older family members manage conflict by absorbing its effects. These findings suggest that coping is not only a psychological adjustment, but also a form of relational and ethical work that sustains caregiving under constrained conditions. Grandparents’ practices reflect a culturally and morally informed response to systemic inequality and emotional vulnerability. Their strategies are shaped by love and loyalty, but also by a lack of structural voice and shared authority.

Implications and Reflections

This study highlights the overlooked yet central role of grandparents in the daily caregiving of children with ASD in China. The findings suggest that support for families of children with ASD in China should go beyond the nuclear unit to include extended family members, particularly grandparents, who often take on substantial caregiving responsibilities but remain excluded from decisions and services. When working with families of children with ASD in China who have related needs, relevant social work services, family services or community services should actively involve the grandparents of children with ASD in the training and communication process, not only to enhance the consistency of care, but also to reduce role ambiguity and emotional marginalization. Structured family interventions that promote intergenerational dialogue can help clarify care expectations and reduce tensions stemming from cultural norms. At the policy level, more attention should be given to the structural vulnerabilities of older caregivers, especially those with limited education or living in rural areas. Targeted support, such as respite care, health monitoring, or caregiver allowances, may help alleviate the hidden costs of their caregiving contributions. Finally, this study calls for greater recognition of caregiving as a moral and relational practice shaped by cultural scripts. Grandparents’ silent efforts to sustain harmony, avoid conflict, and redirect emotional energy toward their grandchildren reflect not resignation, but a culturally rooted ethics of care. Future research and family support programs should better account for this relational complexity in designing inclusive and culturally sensitive interventions. Consistent with the study’s exploratory design, its findings also provide a foundation for future quantitative research. For instance, the qualitative themes identified (e.g., protecting harmony through silence) can be developed into testable hypotheses regarding the relationship between specific cultural coping strategies and family-level outcomes (e.g., perceived cohesion or parental stress).

Conclusion

This study explored how grandparents of children with ASD in China experience and cope with intergenerational caregiving tensions. Findings reveal that while deeply involved in daily care, grandparents often face marginalization shaped by family structures and cultural norms. Their coping reflects a form of moral labor grounded in silence, compromise, and emotional redirection. The study highlights the need for culturally sensitive, family-inclusive support systems that better recognize the caregiving roles of extended family members, especially grandparents, in Chinese and similar cultural contexts.

Limitations

First, the study lacks a comparison group of families with typically developing children. This makes it difficult to ascertain whether the intergenerational tensions identified, such as conflicts over expert versus experiential knowledge, are specific to the context of ASD or are common in most intergenerational caregiving arrangements. Second, the study’s validity is constrained by its reliance on a single informant type (grandparents) and a single data collection method (self-reports). The perspectives of parents and grandchildren are crucial for a complete understanding of family dynamics (Liang et al., 2021). Grandparents’ self-reported perceptions of their role or the reasons for conflict may be based on false perceptions or misunderstandings that could be clarified by incorporating parental perspectives. Third, the reliance on self-reports, without the triangulation of observational methods, is a limitation. Observational approaches would be necessary to capture the objective interactions within the family, rather than only the grandparents’ interpretation of those interactions. Fourth, although participants were drawn from both urban and rural areas across three provinces in western China, the regional scope limits generalizability to other parts of the country. Future research with larger, more diverse samples may reveal contextual variations. Finally, this study relied on single interviews, which may not capture changes in roles or tensions over time, and participants may have underreported conflict due to its sensitive nature.

Supplemental Material

sj-docx-1-sgo-10.1177_21582440261420268 – Supplemental material for Managing Tensions in Intergenerational Care of Children With Autism Spectrum Disorder in China: A Qualitative Study of Grandparents’ Experiences

Supplemental material, sj-docx-1-sgo-10.1177_21582440261420268 for Managing Tensions in Intergenerational Care of Children With Autism Spectrum Disorder in China: A Qualitative Study of Grandparents’ Experiences by Fengying Han and Xin Gao in SAGE Open

Footnotes

Acknowledgements

The authors thank all the grandparents who generously shared their time and experiences for this study. Special appreciation is extended to the staff and facilitators at the intervention centers, special education schools and peer support groups who assisted with participant recruitment.

ORCID iDs

Fengying Han

Xin Gao

Ethical Considerations

The study followed the Measures for Ethical Review of Biomedical Research Involving Human Beings issued by the National Health Commission of the People’s Republic of China and the 1964 Helsinki Declaration and its later amendments; Ethical approval for this study was obtained from the Academic Committee of School of Philosophy and Sociology, Northwest Normal University, ethical approval number: 20241008H, date of approval: 09/10/2024.

Consent to Participate

Prior to the start of this study, the written informed consent was obtained from all participants.

Author Contributions

Conceptualization: Fengying Han; Methodology: Fengying Han; Data collection and analysis: Fengying Han, Gao Xin; Writing (original draft preparation): Fengying Han, Gao Xin; Writing (review and editing): Fengying Han, Gao Xin; All authors have read and agreed to the published version of the manuscript.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Availability Statement

With the consent of all participants in this study, all data generated and/or analyzed during this study may be requested from the corresponding author, with reasonable requests.

Supplemental Material

Supplemental material for this article is available online.

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